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What I've Realized as a Mama of Multiple Kids With Disabilities

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To the mama of multiple kids with disabilities,

As a mama bear of four beautiful babies, I can honestly say I never thought my life would look the way it does. I’m the mama of four, two of whom have disabilities. My oldest child, age 6, has cerebellar ataxia, a genetic disorder that is likely hereditary. My 4 and 2 year olds are typical, and my newborn may also have ataxia.

I think when I started my journey as a mother with my oldest, I thought, “Oh, this is hard. I’ve got this though.” I quickly became and expert on OT, PT, speech, specialists and more. We navigated misdiagnoses and learned how to advocate for his needs. We worked hard to help him meet his milestones and reach his potential, and are still working hard alongside him today.

When I had my second child, and all my fears of her having delays quickly subsided, I was so relieved that I almost felt guilty for the feeling. Baby number three was born 14 days late in a whirlwind with his broad shoulders that got stuck in delivery and severe lip and tongue ties. We resolved the initial feeding issues quickly, but I found myself on pins and needles watching him, making sure he met milestones, asking my son’s therapists if what he was doing was developmentally appropriate. He’s my “in between” babe. He taught me patience and trust.

So when baby number four flew into our life, I tried to not let myself worry. We learned while pregnant with baby number four that all my babes had a 50% chance of having the same genetic disorder as my oldest. I told myself to just enjoy the moment, that I’d been paranoid in the past and worry wouldn’t help anything. But something wasn’t right. Feeding issues, a nagging feeling that something was up, that momma gut that just won’t stop nagging. When she was 6 weeks old, things changed. Before this I saw myself as the mom guru. I had been there, done that and rocking it. But when my fourth didn’t pass her swallow study and landed in the hospital to get an NG tube, my head spun. I was immersed in fear of unknown. My first baby’s disabilities all revolved around things like leg braces, glasses, motor and speech delays. I didn’t know anything about feeding tubes, pumps, aspirating. My newborn and I were ripped from a breastfeeding relationship I may never be able to experience that again.

Now, a few weeks after our week-long stay in the hospital, we are finding our new normal, and that is not something I thought I’d be able to say. But here we are, the scariness and unknown, with a beautiful little baby who is now thriving and growing thanks to a tube in her little nose. I’ve found a strength and confidence I didn’t know I had inside me.

Like I said earlier, I can honestly say I never thought my life would look the way it does. Instead of play dates, piano lessons and ballet, my world spins with therapies, specialist appointments, orthotics, feeding tubes, glasses, sensory items and medicines. My diaper bag has tape, scissors, syringes, a stethoscope right alongside diapers, wipes and changes of clothes. And you know what? I wouldn’t change it. My four children are my world. I would do anything and learn anything to keep them safe and thriving. Our life is not normal in any sense of the word. But our life is full of love, chaos, joy and hard work. My four children are my world, and I have a deeper sense of purpose to help those in the world thanks to my own children’s stories.

Lead photo provided by contributor

Originally published: April 30, 2020
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